REGISTERED COMPANY NUMBER: 08287609 (England and Wales) REGISTERED CHARITY NUMBER: 1150256
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE (A COMPANY LIMITED BY GUARANTEE)
Report of the Trustees and
Financial Statements for the Year Ended 31 March 2023
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Contents of the Financial Statements for the Year Ended 31 March 2023
| Page | |
|---|---|
| Reference and Administrative Details | 1 |
| Report of the Trustees | 2 to 8 |
| Independent Examiner's Report | 9 |
| Statement of Financial Activities | 10 |
| Balance Sheet | 11 |
| Notes to the Financial Statements | 12 to 16 |
| Detailed Statement of Financial Activities | 17 |
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Reference and Administrative Details for the Year Ended 31 March 2023
| Trustees | Ms S Cowie President |
|---|---|
| Ms J A Crowe Vice-President | |
| Mrs T A Mathieson | |
| Ms I Hontanilla | |
| Ms L Chavez | |
| J E Green | |
| Company secretary | Mrs T A Mathieson |
| Registered office | Suite 2 Vermont House |
| Washington | |
| Tyne and Wear | |
| NE37 2SQ | |
| Registered company number | 08287609 (England and Wales) |
| Registered charity number | 1150256 |
| Independent examiner | James Anderson & Co |
| Chartered Accountants | |
| Pentland Estate | |
| Straiton | |
| Edinburgh | |
| EH20 9QH |
Page 1
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 March 2023. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).
Objectives and activities
Our objectives and aims
The objects for which the company is established are to relieve sickness amongst families affected by Niemann-Pick diseases, any distress which may arise therefrom and to advance the education of such families, interested professionals and the general public in all matters concerning such diseases as the governing council may in its discretion determine.
The following aims were agreed at the first meeting:
-
To enhance progress and maximise the use of resources through international collaboration.
-
To share available information.
-
To facilitate strong networks of Foundations, Researchers, Clinicians and Industry representatives.
-
To identify shared goals and address common challenges.
-
To co-ordinate access to clinical trials and therapies.
-
To be able to act as an international advocate for those affected these diseases.
-
To act as an advocate, speaking with one voice re. health policy.
Review of activities
The INPDA provides a collaborative forum for the sharing of information and experience regarding all aspects of NiemannPick disease, including care and support, the provision and distribution of information and the furtherance of research. Our global network of non-profit organisations working in the field of Niemann-Pick disease (NPD) now extends to 24 members in 18 countries, with members united by a single aim - to improve outcomes for all those affected by Niemann-Pick diseases:
Argentina, Australia, Brazil (2), Belgium, Canada, China, France (2), Germany, Italy, The Netherlands, Norway, Pakistan (1) Spain (3), Switzerland, Taiwan, Tunisia, United Kingdom (2), USA (2).
All our activities are undertaken in line with our aim of facilitating progress in the field of Niemann-Pick diseases. By providing a forum for mutual support, the INPDA aims to establish working links between all non-profit Niemann-Pick support groups and to raise awareness of the nature and operations of these, sometimes very different, organisations.
Our Executive Committee oversees the day-to-day management of the INPDA and reports regularly to the Full Member Council via quarterly teleconferences. This year, we have continued to facilitate progress by:
-
Supporting and developing patient advocacy leadership and offering practical advice and support to newly established patient groups.
-
Using our shared experience to highlight and promote best practice in patient care and treatment
-
Accelerating research through the creation of networks and sharing of information
-
Encouraging a cross-sector collaborative approach
-
Undertaking global advocacy activities in support of therapy development
-
Supporting global interaction and communication
-
Fostering the effective use of resources and minimising duplication
Page 2
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
Objectives and activities Significant activities
A key element of our work is raising awareness of our collective challenges and the high level of unmet need that exists within the global Niemann-Pick community. Never has the need for awareness of Niemann-Pick diseases been more apparent, and in order to achieve our aim to accelerate progress, there are multiple targets for our awareness efforts, including:
-
regulators and the pharmaceutical industry - to assist understanding of the unmet needs of our community and to accelerate progress towards approved therapies
-
clinicians - to improve the diagnostic odyssey faced by patients and families
-
researchers and scientists - to accelerate research in NPD
-
funders - to underline the need for our efforts in advocacy and research to continue
-
newborn screening and its potential benefits
Representatives of the INPDA have attended and presented at key conferences around the world, virtually and in person, including patient group events and wider rare disease events.
We have also maintained and further developed our relationships with clinical and research institutions, drug developers and other key stakeholders. The high-level work provides the opportunity for us to advocate for improvements to care and services, access to clinical standards of care, and access to treatments and therapies where they exist.
Representatives have also met with statutory bodies, health authorities and regulators around the world. These essential efforts address issues such as the current regulatory environment, working with pharmaceutical industry and HTA bodies, including;
-
Continuing to work with our members to provide information and evidence to support access to available therapies either approved or through Early Access Programmes (EAPs)
-
Advocating on behalf of our global community directly with regulators
-
Appropriate involvement in regulatory meetings
-
Collection of evidence through surveys, information gathering
-
The need to provide expert patient advocates who can speak on behalf of the whole patient community in activities to support disease understanding and therapy development, including regulator or industry led advisory boards - Continuing to work with clinicians and researchers to develop robust tools to measure disease progression and meaningful change, clinical endpoints and patient reported outcomes
This year, we have continued to undertake steps to perform our own community research studies, aiming to collect and develop evidence of impact and unmet need, and to provide information that will increase disease understanding, and support research and therapy development. The data generated by these efforts is providing an excellent resource for the community as we develop a body of knowledge re disease impacts.
Our planned Face-to-Face meeting had been virtual in 2021. We held a Face to Face meeting in 2022 however with lingering travel restrictions still in place due to the COVID pandemic there were some members still unable to attend in person. As a result a hybrid meeting format was utilized to maximize reach of the meeting and to ensure key projects and priorities identified at the 2021 virtual meeting continued to move forward with input from all. This valuable opportunity to come together is essential for our patient advocacy leadership representatives plus key figures in the clinical, research and scientific field of Niemann-Pick diseases. An INPDA Face to Face biennial meeting is planned for November 2023 and this will allow us to return to our regular schedule for biennial meetings and provide an opportunity for all member organizations to participate in person in this important event.
To assist capacity building, we have successfully implemented three of four voluntary Executive Liaison Roles (Research Liaison officer ASMD, Research liaison officer NPC, and Newborn screening liaison officer) and are working to implement the fourth liaison officer role (Membership Liaison Officer) in order to support progress in the INPDA's key priority areas. These roles were recruited internally (from INPDA Member Groups) and externally (individuals / organisations with the necessary experience/interest) and in line with the requirements of our Governing document:
-
Research Liaison Officer, ASMD - Research Liaison Officer, NPC
-
Membership Liaison Officer
-
Newborn Screening Liaison Officer
In support of wider collaboration, and to ensure our voice is heard at all levels, the INPDA is a member of EURORDIS and Rare Disease International.
Page 3
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
Objectives and activities Key Projects
The INPDA is currently engaged in four key projects. Each aim to make a difference in the areas of scientific, clinical and therapeutic research, patient care, access to treatments and time to diagnosis.
The International Niemann-Pick Disease Registry (INPDR), which is an independently governed non-profit organisation, has the power to increase knowledge and understanding of NPD through the collection of much needed patient data a global scale. The INPDA was intrinsic in the realisation of this important resource and continues to support its development, by acting as an ambassador, sharing information and supporting the collection of data
The Think Again. Think NP-C Campaign first launched in 2015, has done much to improve diagnosis of NPC by targeting specialist health care professionals who are currently unfamiliar with the condition and giving them the tools they need to recognise and act upon the symptoms of NPC.
The INPDA Information Portal was developed with the support of a Genzyme PAL grant. This open access Portal, which is hosted on the INPDA website, brings together a wide range of helpful information for patients, families, and professionals working in the NPD field, in a range of different languages and formats. The Portal reflects the collaborative spirit of the INPDA and continues to grow along with our respective member groups, who provide articles and documents, and translations where necessary, further boosting the ongoing global effort.
Public benefit
In shaping our objectives for the year, agreeing our priorities and planning our activities, the trustees have considered the Charity Commission's guidance on public benefit, including the guidance 'public benefit: running a charity (PB2)'.
As a network for non-profit organisations associated with the group of rare diseases known as Niemann-Pick diseases, we aim to facilitate progress through the provision of an international collaborative forum for the sharing of information and experience regarding all aspects of Niemann-Pick disease, including care and support, the provision and distribution of information and the furtherance of research. We meet virtually every two months and bi-annually face to face, with ad hoc meetings as required.
Benefits of the INPDA
The INPDA has a global reach; therefore, it is ideally placed to effectively communicate information to the Niemann-Pick community, offering equity of access and ensuring consistency and accuracy of the information provided.
-
By sharing information and maximising communication, we can help each organisation to develop their leadership and to use their time and resources efficiently and effectively.
-
We aim to ensure that all member organisations are informed of, and if appropriate, able to act upon, the most recent scientific and therapeutic developments.
-
Wherever possible, we will help to encourage research by supporting the formation of networks, providing seed funding and working in partnership to secure grant funding.
-
By working together, members have a stronger voice with which to influence change and bring improvements for Niemann-Pick patients everywhere.
Page 4
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
Achievement and performance
Charitable activities
Grant funding in the form of unrestricted educational grants enabled the charity to carry out its activities. Further funding came from the Roy & Murray Green Together Fund.
Throughout this year, as we continue to work out way out of the impacts of the COVID 19 pandemic we have continued to maximise our use of virtual technology to keep each other informed and to stay connected. In this way we have been able to maintain our activities. Staying connected has provided member groups the opportunity to share their experiences, stay informed and continue to raise our voice on behalf of those affected by Niemann-Pick diseases. As the impacts of the COVID 19 pandemic decrease we are focused on rebuilding opportunities for networking and fundraising that were limited during the pandemic.
We have continued to maintain a strong presence in the field of research and have collaborated with other rare disease organisations, research and academic institutions on a global basis to progress research, facilitate clinical development of promising therapies and influence Newborn Screening.
We continue to sustain appropriate relationships with the pharmaceutical companies engaged in clinical programmes and activities in the field of Niemann-Pick diseases and to provide high level support and information to the patient advocacy leaders supporting our community.
We continued to support the International Niemann-Pick Disease Registry (INPDR) in its objectives to collect clinical, genetic, diagnostic and outcome data from patients with Niemann-Pick diseases. The INPDR is an independent charitable company with INPDA representatives appointed as Board and Scientific Advisory Committee Members.
Financial review Financial position Income
Grant funding in the form of unrestricted grants enabled the charity to carry out its activities. Further funding came from the Roy & Murray Green Together Fund. Incoming funds were higher in this year at £72,315 as compared to £20,112 in the previous year.
Expenditure
Expenditure for the year was £56,716 as a result of the Face to Face Conference in comparison to £10,393 in the previous year.
Financial Strategy
Our Financial Strategy is based on levels of incoming funds matching the expenditure required to deliver our objectives and activities. Whilst income will be spent within a reasonable period of receipt to fund the operation of the Charity, we have a responsibility to manage risk, and to ensure the charity is financially sustainable. We will therefore hold a level of reserves to ensure the smooth running of the Charity during times of financial uncertainty.
Reserves policy
The free reserves at 31 March 2023 amounted to £49,543 (2022 £40,894). This reserve is considered a sufficient reserve against variations in funding which can arise from time to time. The board aim is to hold six months running costs in reserve.
Page 5
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
Future plans
At our Face to Face meeting in July 2022 the priorities established at the virtual meeting in 2021 were reviewed and updated. These will be reviewed again at the Face to Face meeting in November 2023. Our priorities were agreed as follows:
-
To safeguard sustainability by ensuring we have the resources we need (financial resources, personnel, member engagement, skills and capacity) to undertake our planned activities
-
To establish support mechanisms for new and developing groups, encourage further support for ASMD, introduce new associate members.
-
To further develop the new Research and Newborn Screening Liaison Officer roles and strive to implement the Membership Liaison officer role
-
Ensure committee structure continues to support progress toward identified priorities
-
Communication - Continue to work to strengthen both our internal and external communication with regular meetings, use of our web portal, social media, and newsletter
-
Continue to raise awareness through ongoing activities and influencing/educating regulators and health policy makers
-
Continue to support and facilitate International Niemann Pick Disease Awareness Day on October 19
-
To further enable research by providing opportunities to collaborate on research projects, minimize duplication and accelerate progress
-
To continue our work with the International Niemann Pick Disease Registry (INPDR) to facilitate the enrolment of patients around the globe into this built for purpose patient registry
-
To plan our next INPDA Face to Face meeting for November 2023
Structure, governance and management
Governing document
The charity is governed by its memorandum and articles of association and constitutes a limited company, limited by guarantee, as defined by the Companies Act 2006.
Recruitment and appointment of new trustees
Future Trustees shall be appointed by the Trustees from time to time following a nomination received from the Nominations Committee (Governing Council). They are volunteers and each takes on responsibilities within the Alliance to coordinate/support an aspect of the Alliance functions.
Organisational structure
The Trustees and all other supporters of the INPDA are volunteers. The Trustees are directly responsible for the effective governance of the charity and for providing appropriate support and guidance and monitoring of all activities. This is carried out in accordance with statutory guidance and legislation as provided by the Charity Commission. Members are asked to follow a code of conduct, which provides clear guidelines as to the standards of behaviour, responsibilities, and best practice expected of those involved with the INPDA. An Executive Committee oversees the day-to-day management of the INPDA and reports regularly to the Full Member Council via quarterly virtual meetings. The Trustees and members meet face-to-face every two years with at least four additional virtual meetings each year in order to review reports and to carry out management and financial reviews.
Induction and training of new trustees
New Trustees are briefed on their legal obligations, the contents of the memorandum & articles of association, the board and decision making processes, the business plan and the recent financial performance of the charity. During the induction they will meet the other Trustees.
Pay policy for staff
Currently, the INPDA has no paid staff members. The Trustees are responsible for the day-to-day management of the Charity, with the support of an Executive Committee. All trustees give of their time freely and no trustee received remuneration in the year, outside of travel and subsistence expenses. In the event of employment, the Trustees are responsible for setting employee salary levels. All salaries are benchmarked with similar roles in the voluntary sector, not with the public or private sectors. The small size of the organisation is also taken into account.
Wider network
The International Niemann-Pick Disease Alliance (INPDA) is an alliance of non-profit support organisations who are associated with the rare group of genetic diseases known collectively as Niemann-Pick Disease. The Alliance was formed with a view to providing a forum where, through the exchange of information, experience and knowledge, progress could be accelerated.
Page 6
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
Structure, governance and management Related parties None of our trustees receive remuneration or other benefit from their work with the charity. At present there are 24 separate foundations in the Alliance.
Member Groups: Argentina - Associaion Niemann Pick de Argentina Australia - Australian NPC Disease Foundation Brazil - Associação Niemann Pick Brasil - ANPB Canada - Niemann-Pick Canada China - China Niemann-Pick Disease Association France - Vaincres Les Maladies Lysosomales Germany - Niemann-Pick Selbsthilfegruppe Italy - Associazione Italiana Niemann Pick Netherlands - Volwassenen, Kinderen en Stofwisselingsziekten Norway - NP Foreningen I Norge Spain - Fundacion Niemann-Pick de Espana Switzerland - Niemann-Pick Suisse UK - Niemann-Pick UK USA - National Niemann-Pick Disease Foundation Associate Members:
Brazil - Niemann-Pick B R-S Belgium- Belgische Organisatie voor Kinderen in volwassenen met een Stofwisselingsziekte France - Niemann Pick Francais Pakistan - LSD Society Pakistan Spain - Asociacíon Niemann Pick de Fuenlabrada Spain - ASMD Espana Taiwan - Niemann-Pick Taiwan Tunisia - Association Tunisienne des Maladies Lysosomales UK - The Hollie Foundation USA - The Wylder Nation Foundation
Related party disclosures are shown at note 12.
Principal risks
The principal risks for the foreseeable future relate to;
-
Increased competition for a reducing number of grant funding opportunities and a limited number of funders
-
Further economic and political pressures which will adversely affect voluntary income.
-
Lack of capacity to increase the rate of grant applications and income streams.
-
A strong dependence on volunteers with no spare capacity to provide cover / plan for succession
Statement of trustees' responsibilities
The trustees (who are also the directors of International Niemann-Pick Disease Alliance for the purposes of company law) are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that period. In preparing those financial statements, the trustees are required to
-
select suitable accounting policies and then apply them consistently;
-
observe the methods and principles in the Charity SORP;
-
make judgements and estimates that are reasonable and prudent;
-
prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business.
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charitable company and to enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
Page 7
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Report of the Trustees for the Year Ended 31 March 2023
This report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small companies.
Approved by order of the board of trustees on 20 December 2023 and signed on its behalf by:
........................................................................ Ms S Cowie – Trustee, President
Page 8
Independent Examiner's Report to the Trustees of International Niemann-Pick Disease Alliance
Independent examiner's report to the trustees of International Niemann-Pick Disease Alliance ('the Company')
I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 March 2023.
Responsibilities and basis of report
As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').
Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under Section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.
Independent examiner's statement
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe:
-
accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or 2. the accounts do not accord with those records; or
-
the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or
-
the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)).
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Christopher Spalding ICAS James Anderson & Co Chartered Accountants Pentland Estate Straiton EH20 9QH
Date: 21 December 2023
Page 9
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Statement of Financial Activities (Incorporating an Income and Expenditure Account) for the Year Ended 31 March 2023
| Unrestricted Restricted fund funds Notes £ £ Income and endowments from Donations and legacies 66,265 6,050 Other trading activities 3 - - Total 66,265 6,050 Expenditure on Charitable activities 4 Meetings 45,483 - Charitable activities 12,133 - Total 57,616 - NET INCOME 8,649 6,050 Reconciliation of funds Total funds brought forward 40,894 11,450 Total funds carried forward 49,543 17,500 |
2023 Total funds £ 72,315 - 72,315 45,483 12,133 57,616 14,699 52,344 67,043 |
2022 Total funds £ 19,813 299 20,112 - 10,393 10,393 9,719 42,625 52,344 |
|---|---|---|
The notes form part of these financial statements
Page 10
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Balance Sheet 31 March 2023
| Notes Current assets Debtors 8 Cash at bank Creditors Amounts falling due within one year 9 Net current assets Total assets less current liabilities NET ASSETS Funds 11 Unrestricted funds Restricted funds Total funds |
2023 £ 25,822 43,498 69,320 (2,277) 67,043 67,043 67,043 49,543 17,500 67,043 |
2022 £ 101 54,267 54,368 (2,024) 52,344 52,344 52,344 40,894 11,450 52,344 |
|---|---|---|
The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 31 March 2023.
The members have not required the company to obtain an audit of its financial statements for the year ended 31 March 2023 in accordance with Section 476 of the Companies Act 2006.
The trustees acknowledge their responsibilities for
-
(a) ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and
-
(b) preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company.
These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies regime.
The financial statements were approved by the Board of Trustees and authorised for issue on 20 December 2023 and were signed on its behalf by:
.............................................
S Cowie – Trustee, President
The notes form part of these financial statements
Page 11
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Notes to the Financial Statements for the Year Ended 31 March 2023
1. Statutory information
International Niemann-Pick Disease Alliance is a private company, limited by guarantee with charitable status and registered in England and Wales. In the event of the charity being wound up, the liability is respect of the guarantee is limited to £1 per member of the charity. The company's registration number and registered office address can be found on the Reference and Administrative Details page.
The presentation currency of the financial statements is the Pound Sterling (£).
2. Accounting policies
Basis of preparing the financial statements
The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.
Going concern
The financial statements have been prepared on a going concern basis as the trustees believe that no material uncertainties exist. The trustees have considered the level of funds held and the expected level of income and expenditure for 12 months from authorising these financial statements. The budgeted income and expenditure is sufficient with the level of reserves for the charity to be able to continue as a going concern.
Income
All income is recognised once the charity has entitlement to the income, there is sufficient certainty of receipt and so it is probable that the income will be received, and the amount of income receivable can be measured reliably.
Donations and grants are recognised when they have been communicated in writing with notification of both the amount and settlement date. In the event that a donation or grant is subject to conditions that require a level of performance before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that those conditions will be fulfilled in the reporting period.
Expenditure
Expenditure is recognised as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably.
All expenditure is accounted for on an accruals basis. All expenses, including support costs and governance costs, are allocated or apportioned to the applicable expenditure headings in the statement of financial activities.
Expenditure on charitable activities includes any VAT which cannot be recovered and is reported as part of the expenditure to which it relates and comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.
Taxation
The charity is exempt from corporation tax on its charitable activities.
Fund accounting
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.
Debtors and creditors receivable / payable within one year
Debtors and creditors with no stated interest rate and receivable or payable within one year are recorded at transaction price. Any losses arising from impairment are recognised in expenditure.
Page 12
continued...
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Notes to the Financial Statements - continued for the Year Ended 31 March 2023
2. Accounting policies - continued
Cash in bank and in hand
Cash at bank and cash in hand includes cash and short term highly liquid investments.
3. Other trading activities
| Other trading activities | ||
|---|---|---|
| 2023 | 2022 | |
| £ | £ | |
| Fundraised income | - | 299 |
| Charitable activities costs | ||
| Direct | ||
| Costs (see | ||
| note 5) | ||
| £ | ||
| Meetings | 45,483 | |
| Charitable activities | 12,133 | |
| 57,616 |
4. Charitable activities costs
5. Direct costs of charitable activities
| Finance & admin costs IT costs Face to face meetings - all INPDA members Meetings, conferences, travel and accommodation Project costs - research Think again: Think NPC Social media & communications Other overheads Independent examiner's fee |
2023 £ 1,653 195 42,875 2,608 4,535 269 2,719 1,694 1,068 57,616 |
2022 £ 1,943 211 - - 1,670 332 2,976 2,193 1,068 10,393 |
|---|---|---|
6. Trustees' remuneration and benefits
There were no trustees' remuneration or other benefits for the year ended 31 March 2023 nor for the year ended 31 March 2022.
Trustees' expenses
During the period there were Trustees expenses of £567 (2022 nil) for travel.
7. Comparatives for the statement of financial activities
| Unrestricted Restricted fund funds £ £ Income and endowments from Donations and legacies 14,000 5,813 Other trading activities 299 - Total 14,299 5,813 |
Total funds £ 19,813 299 |
|---|---|
| 20,112 |
Expenditure on
Page 13
continued...
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Notes to the Financial Statements - continued for the Year Ended 31 March 2023
| 7. Comparatives for the statement of financial activities - continued Unrestricted fund £ Charitable activities Charitable activities 10,393 NET INCOME 3,906 Reconciliation of funds Total funds brought forward 36,988 Total funds carried forward 40,894 8. Debtors: amounts falling due within one year Trade debtors 9. Creditors: amounts falling due within one year Other creditors Accruals and deferred income 10. Analysis of net assets between funds Unrestricted Restricted fund funds £ £ Current assets 51,820 17,500 Current liabilities (2,277) - 49,543 17,500 11. Movement in funds |
Restricted funds £ - 5,813 5,637 11,450 2023 £ 25,822 2023 £ 1,209 1,068 2,277 2023 Total funds £ 69,320 (2,277) 67,043 |
|
|---|---|---|
| Net | |||
|---|---|---|---|
| movement | At | ||
| At 1/4/22 | in funds | 31/3/23 | |
| £ | £ | £ | |
| Unrestricted funds | |||
| General fund | 40,894 | 8,649 | 49,543 |
| Restricted funds | |||
| Roy & Murray Green Together Fund | 11,450 | 6,050 | 17,500 |
| TOTAL FUNDS | 52,344 | 14,699 | 67,043 |
Page 14
continued...
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Notes to the Financial Statements - continued for the Year Ended 31 March 2023
11. Movement in funds - continued
Net movement in funds, included in the above are as follows:
| Incoming | Resources | Resources | Movement | Movement | |
|---|---|---|---|---|---|
| resources | expended | in funds | |||
| £ | £ | £ | |||
| Unrestricted funds | |||||
| General fund | 66,265 | (57,616) | 8,649 | ||
| Restricted funds | |||||
| Roy & Murray Green Together Fund | 6,050 | - | 6,050 | ||
| TOTAL FUNDS | 72,315 | (57,616) | 14,699 | ||
| Comparatives for movement in funds | |||||
| Net | |||||
| movement | At | ||||
| At 1/4/21 | in funds | 31/3/22 | |||
| £ | £ | £ | |||
| Unrestricted funds | |||||
| General fund | 36,988 | 3,906 | 40,894 | ||
| Restricted funds | |||||
| Roy & Murray Green Together Fund | 5,637 | 5,813 | 11,450 | ||
| TOTAL FUNDS | 42,625 | 9,719 | 52,344 |
Comparative net movement in funds, included in the above are as follows:
| Incoming | Resources | Movement | |
|---|---|---|---|
| resources | expended | in funds | |
| £ | £ | £ | |
| Unrestricted funds | |||
| General fund | 14,299 | (10,393) | 3,906 |
| Restricted funds | |||
| Roy & Murray Green Together Fund | 5,813 | - | 5,813 |
| TOTAL FUNDS | 20,112 | (10,393) | 9,719 |
The general fund is free to use in accordance with the objects of the charity.
The Roy & Murray Green Together Fund is to enhance the development and integration of the INPDA including the support of travel and staffing for the organization.
Page 15
continued...
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Notes to the Financial Statements - continued for the Year Ended 31 March 2023
12. Related party disclosures
During the year salary, admin and travel costs etc were recharged by a member of the alliance, Niemann-Pick UK(NPUK) of £8,750 (2022 £6,528). Costs of £243 were incurred on behalf of NPUK. There was a balance owed to NPUK of £965 at 31 March 2023 (2022 £401).
The International Niemann-Pick Disease Alliance (INPDA) is a member of the International Niemann-Pick Disease Registry (INPDR). During the year costs were incurred on behalf of the INPDR and reimbursed of £578 (2022 £764). Costs were incurred by INPDR on behalf of the INPDA and reimbursed of £2,920 (2022 - £nil). At 31 March 2023 there was a balance owed by INPDR of £578 (2022 £nil).
During the year costs were recharged by a member of the alliance, National Niemann-Pick Disease Foundation of £39,543 (2022 £1,288). Of this £39,182 was in relation to the costs of the 2022 Face to Face Conference.There was no balance outstanding at the year end.
Page 16
INTERNATIONAL NIEMANN-PICK DISEASE ALLIANCE
Detailed Statement of Financial Activities for the Year Ended 31 March 2023
| 2023 | 2022 | |
|---|---|---|
| £ | £ | |
| Income and endowments | ||
| Donations and legacies | ||
| Donations | 72,315 | 19,813 |
| Other trading activities | ||
| Fundraised income | - | 299 |
| Total incoming resources | 72,315 | 20,112 |
| Expenditure | ||
| Charitable activities | ||
| Finance & admin costs | 1,653 | 1,943 |
| IT costs | 195 | 211 |
| Face to face meetings - all INPDA members | 42,875 | - |
| Meetings, conferences, travel and | ||
| accommodation | 2,608 | - |
| Project costs - research | 4,535 | 1,670 |
| Think again: Think NPC | 269 | 332 |
| Social media & communications | 2,719 | 2,976 |
| Other overheads | 1,694 | 2,193 |
| Independent examiner's fee | 1,068 | 1,068 |
| 57,616 | 10,393 | |
| Total resources expended | 57,616 | 10,393 |
| Net income | 14,699 | 9,719 |
This page does not form part of the statutory financial statements
Page 17